woman holding head

J., a long Covid patient from the Midwest, is still suffering extreme symptoms more than a year later — tachycardia, extreme fatigue and other symptoms. Walking the dog around the block, she said, raised her heart rate to 212 beats per minute.

Like many other Americans with office jobs, she has been working remotely. Yet her employer, a hospital system, has told her she will have to go back to the office, in her case alternating a week working in the office and a week working from home. She’s pretty sure she can’t do that, so she has asked her employer for an accommodation, which would be governed by the Americans with Disabilities Act. Her employer said no.

“I’ve been on short term disability,” she said in a video interview in late April. “I requested an extension February 23, and it is still pending. I have not had a paycheck since February.”

Request for accommodation denied

With the return-to-the-office plan, she said, “with my symptoms as flip-flop as they are, I’m just I’m not ready for that. So I entered in a reasonable accommodation request to work remotely every week, which they denied. I can work every other week remotely, but not every week. I’m just thinking when it comes to A.D.A. and reasonable accommodations, you have to have undue hardship to the company. I don’t see how there is undue hardship if you’re willing to do it every other week.”

Disability questions from Americans with long Covid are increasingly cropping up, as workplaces plan to bring people back to the office. Yet the current practices of employers, and the legal landscape, have an unpredictable, inconsistent feel. Some employers are more accommodating than others. Some jobs can be done remotely and some can’t.  Some people are still debilitated by Covid, more than a year later. And some doctors and other medical professionals — and disability insurance providers — refuse to accept that long Covid can be that long, or that debilitating.

And there’s much more to come.

“We’ve now added anywhere from 3 to 10 million people into the U.S. disability system, but no one is addressing it,”  Gary Phelan, a partner at Mitchell & Sheahan, P.C., an employment and labor law firm based in Stratford, Conn., wrote in an email interview. He also noted that of the people who recently got sick with Covid, some percentage — experts say anywhere from 10 to 30 percent — will have long-lasting symptoms.

What is disability anyway?

Disability is always a complicated topic, and it’s more complicated now with Covid, said Phelan, who teaches disability law at Quinnipiac University School of Law and who co-authored a book called “Disability Discrimination in the Workplace.”

The word means different things in different contexts, Phelan noted.

For many people, Phelan said, the word disability, summons up the Americans With Disabilities Act, which protects people with a substantial impairment of a life activity like seeing, hearing or breathing, focusing on whether a person needs an accommodation to perform a job.

The other kind of disability, short-term or long-term disability, he said, “in many ways, it’s the opposite. It’s where you, due to your medical condition, are not able to do your job. What often happens is where confusion arises, they can be intertwined.” And short- or long-term disability can carry financial benefits: An insurer who is paid to supply disability via your employer’s policy can vet you to see if you qualify, and approve or deny your claim. Some states like New York, also require employers to provide disability for off-the-job injuries or illnesses, providing weekly payments.

Also, there’s Social Security Disability Insurance and Supplemental Security Income, federal programs that supply cash for basic needs for disabled people. The rules for qualifying for federal aid are complicated and are open only to people with long-term disabilities; few Covid patients have been sick for long enough to meet these requirements, experts say.

Work from home becomes commonplace

Phelan said the Covid pandemic has turned disability upside down. One big thing that it did was make it possible for many people to work from home without question. Previously, that had been a huge issue, he said; one of his recent cases with a client with mobility issues who wanted to work from home finally settled.

“Employers and most courts said, a physical presence in the workplace is a requirement of the job,” before the pandemic, he said. “So now the question really is, is it essential function of the position?

“Can the person perform the essential functions of the job from home? That’s going to be the most important accommodation issue this year, I think there is going to be many claims like that.

“Another one, I think you’re going to start to see: The general assumption is there can be a fear of Covid, or a fear of vaccines. That’s not a disability. So an employer doesn’t have to accommodate it. But what if it’s due to an underlying severe anxiety condition — so people with severe anxiety, have more anxiety around this? That may be a disability that they might have to accommodate.”

Filing a claim

If a person feels he or she has not been accommodated, after exhausting all administrative actions, then it might be time to file a claim, Phelan said.

“There’s usually a timeframe, usually six months, that you have to wait,” he said. “The claim has to be with the agency to see if they can resolve it. Ideally, you’re filing a claim saying: ‘They violated the A.D.A. because I wasn’t accommodated, and as a result, I was terminated.’ Because most people if they’re given a choice — work here, but we’re not going to accommodate you — they will end up being terminated or resigning due to the failure to accommodate. Most of the time what happens is you negotiate some sort of financial settlement. Sometimes the employer, once they’re contacted, might be willing to make the accommodation. But how most cases are resolved is with a financial payment of some kind, which depends on the strength of the case, how much money that person made.”

Social Security is reportedly considering a change in the Social Security Disability Income procedures, which currently take months and have extensive paperwork and documentation requirements. Meanwhile, people continue to struggle in limbo.

Phelan said this is not his area of expertise, but he thinks change is needed: “You’re putting anywhere from 3 to 10 million people on top of the ordinary overburdened Social Security Administration. You’re changing the whole disability foundation in America with millions more people filing. Something’s got to be done. It would be great if they do that — somehow it’s got to be changed. If you’ve got millions of people now who are being denied Social Security, because they’re applying all the old rules, most people are going to be more of a financial burden. First you’re going to be filing for bankruptcy, because that’s really the safety net. And if the safety net’s not going to be available for for long-haulers, you’re going to have an increase in homelessness. Because where do they turn? It’s not good.”

Not working, not on disability, and in limbo

C., a teacher on the Eastern Seaboard, maintains her health insurance coverage though she has not worked since last March and is not being paid disability. Like J., she is still debilitated months later, with no clear idea of when she will be able to work. She is experiencing occipital neuralgia, fibromyalgia, mild cognitive impairment, brain fog, severe joint pain, gastrointestinal issues, memory loss and dizziness, among other symptoms

C. said:  “What’s interesting is that many corporations, many districts, don’t have any human resource guidance on how to deal with the abruptness of long Covid and its effects on their employees. People are saying ‘talk to this person,’ or ’email this person.’  But I’m smart enough to know that what that means is that you just don’t know how to deal with me. So what I’m doing right now is waiting, still asking for human resources guidance.

“Because right now, there’s no sense being made. Nobody can tell me anything, because they don’t know — on top of the fact that reopening opens up a whole other span of problems. We need to do a better job of that.

“And there’s no long-term federal guidance. I feel sad for all of us with long Covid who are going to have to fight this battle, whether it’s in courts, with lawyers, or however, we have to fight this battle to get the benefits that we deserve. And to get the compassion and the language — language that speaks to the fact that you understand that this is a disabling condition.

“it’s no different than, sadly, if somebody were to get cancer, or another crippling condition or disease. We still need that support. And a lot of us, including myself, haven’t received it.”

A teacher, 28, has multiple ailments

Meanwhile, people like J. and C. and Miranda Erlanson, a teacher in Texas, continue to struggle.

Erlanson, 28 years old, first got sick March 10, 2020. She has developed muscular dystrophy and Guillain-Barre syndrome, a disorder in which the body’s immune system attacks the nerves. She has autonomic dysfunction of her nervous system, dysautonomia, and Postural Orthostatic Tachycardia Syndrome (POTS), meaning her blood pressure, oxygen and heart rate change drastically when she moves, and she becomes dizzy and lightheaded. She also has nerve damage called small-fiber neuropathy. She takes supplemental oxygen because she failed her oxygen stress test, she said in a phone interview, and needs oxygen whenever she talks or moves. She has an immune deficiency, she added, “and that is why when I got the vaccine, I didn’t build any antibodies.” She has muscle spasms and a heart arrhythmia, she said, and the lower lobes of her lungs collapsed. She was also diagnosed with multi-system inflammatory organ disorder, she said. She has had intermittent fevers, she added.

Erlanson was working in the Bastrop Independent School District in Bastrop, Texas, when she got sick, she said. She had a bad summer, but transferred to the Austin Independent School District because they had a process for applying for disability, which the Bastrop district lacked.

She had received a temporary accommodation from the Austin school district, she said, starting in September, to work from home because of her disabilities, to teach seventh- and eighth-grade English and English as a Second Language. She also had her accommodation renewed through March 1, and then applied again — and was told that the accommodation would end on March 22. But on March 12, she said, her principal called and “said I’m too much of a burden, and that I was taking too much time for doctor’s appointments, and that they were going to  let me go. And they were deleting my position, dissolving my classes and sending those students to other teachers. They canceled my accommodation, and supposedly put me in a priority pool to be transferred to a different position that is open for the fall. They also appealed my unemployment and denied that too.”

E.E.O.C. case

Last December, the Austin school district ended disability for about 900 teachers, forcing them to return to the classroom, she said — teachers with cancer and other conditions. Erlanson was one of 48 people who got an extension, but that has now ended, she said.

As a result, she said, she has filed a formal complaint with the Equal Employment Opportunity Commission.

In response to questions about Erlanson’s story, Eduardo Villa of the district’s communications department wrote in an email:

“Each year, the district uses projected enrollment data to determine staffing allocations at campuses. If a campus is projected to be allocated fewer teachers for the coming year, board policy DK (Regulation) is applied to determine the teachers at the campus that will be placed in the priority pool for reassignment. Per the contract each teacher signs, the district has the authority to assign or reassign based on campus or district need. Teachers in the priority pool are given priority for vacancies at other campuses for 2021-2022 and are guaranteed a position in the district should they choose to pursue it.

“In regards to Austin ISD’s disability policy:

“1. Board policies DAA (Legal)(Local)DIA and DEC(Local) govern the determination of a disability and the ADA interactive process that is entered into between employer and employee. 

“2. We do not have a specific disability policy for COVID-19. We have utilized the information distributed by the federal government and the CDC for appropriate COVID-19 related actions. The Families First Coronavirus Response Act was also a factor in the accommodations and leave provided to employees last year and this year. Please see the websites below for additional information.



Meanwhile, Erlanson said she is pursuing a disability claim with the Bastrop district’s disability provider, Unum, because she first got sick in Bastrop and they should be responsible, she said.

She is in a clinical trial for a medication called leronlimab, she said, a monoclonal antibody similar to the one that former President Donald Trump got when he was ill. That has brought some improvement, she said — she is no longer in a wheelchair. But she’s still suffering from a multitude of symptoms. That was part of what allowed her to improve enough to work from home, she said, but now that her job has been dissolved, there’s no work to do — and no disability or unemployment.

“It’s been really great having the school district take away everything that could have possibly helped me,” she said.

What you can do

Phelan explained what to do if you feel that you’re disabled and your employer is not accommodating you, you can hire a lawyer to represent you — if you have exhausted administrative remedies, as Erlanson feels she did.

Others have chosen to file an E.E.O.C. complaint themselves. Phelan explained that there are state and federal ways to file. States have different regulations, he said, and this is where an employment lawyer can be handy. “In Connecticut, we have the C.C.H.R.O., the Connecticut Commission on Human Rights and opportunities — that’s where you file a state claim, and you can file a claim with the Equal Employment Opportunity Commission. Most states, but not all, have a dual filing arrangement, so that the feds and the state aren’t duplicating efforts — the state investigates on behalf of both. In some other states, it’s really handled separately.”

Hiring a lawyer can be pricey, of course. But Phelan said he and other lawyers will often take a case on a contingency basis. The National Employment Lawyers Association has about 3,000 lawyers nationally, Phelan said. He often refers people to N.E.L.A. members in another state, and you can seek a referral to someone who will do this on a contingency basis. A common fee is 30 percent of any financial settlement, though some arrangements are governed by state laws.

For a broad how-to, Alison Sbrana, a member of the Body Politic support group, did a question-and-answer session with us that we posted on the blog. She has myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a chronic illness that appears to have a lot in common with long Covid. Find the Q-and-A here.

The Job Accommodation Network has a post listing possible accommodations for a variety of long Covid symptoms, including fatigue (rest breaks, flexible schedule and others), shortness of breath (different mask, less exertion and others). JAN is funded by a contract from the U.S. Department of Labor, Office of Disability Employment Policy.

The site “How to Get On” is an easy-to-navigate resource with lots of answers.

Support groups for Covid patients can be a great first stop, Phelan said, “based on the individuals I’m representing, because that’s where they can get ideas. And that’s where people know what they’re going through.” In addition to concrete knowledge, he said, it’s clear to people comparing notes there that “particularly because this has become so politicized, people are going to be negative, and this can help them get them through each day and try to navigate.”

Survivor Corps, founded by Diana Berrent, one of the first people in the New York area to test positive for Covid, works to connect patients with medical research. Their Facebook group has over 165,000 members as of May 2021.

The Body Politic Covid slack support group has about 25,000 members as of May 2021. Body Politic started the COVID-19 support group after two members became sick with coronavirus in early March and realized they needed a community of people like themselves.

The Covid Long-Haulers discussion group on Facebook is very active, with about 12,500 members as of May 2021.

The Covid Long-Hauler advocacy project on Facebook, with about 5,300 members as of May 2021, was founded by Karyn Bishof, a firefighter and paramedic in Florida.

There are numerous other support groups on Facebook.

Reddit also has a number of coronavirus forums, many with a geographic bent: r/covid19positive, r/coronavirusNY, r/coronavirusNYC, r/coronavirusTX, r/coronavirusTN, for example.

On the Body Politic Slack group, patients have begun a crowdsourced list of doctors and lawyers or disability consultants that they recommend. Many are in the New York area, and there are others elsewhere in the United States and overseas. At the top of the doctor document, it says: “This list is maintained by the Body Politic Covid-19 support group — recommendations are from fellow patients in the group. Body Politic does not endorse any providers. Please keep in mind that each patient can have different experiences. This is a living document so we encourage group members to submit new recommendations or updates for providers who are knowledgeable and helpful in managing symptoms after Covid-19. If you see an issue listed on the spreadsheet, please contact an admin in slack.” Here’s the list.

Among the disability consultants they mention: In the New York area, the Legal Aid Society’s Access to Benefits (A2B) Helpline 888-663-6880 is open Monday through Friday from 10:00 a.m. to 3:00 p.m. Interpreters are available for all languages. A2B staff can assist New York City residents with: Medicaid, SSA disability, immigration, housing, HRA public assistance, and employment and unemployment benefits matters.

Barbara Comerford is another lawyer who has been interviewed on this topic; she’s in the New York City tri-state area.  She can be found here.

Cassie Springer Ayeni, a Bay Area lawyer who did an educational event on the topic at Body Politic, can be found here.

Jeanne Pinder  is the founder and CEO of ClearHealthCosts. She worked at The New York Times for almost 25 years as a reporter, editor and human resources executive, then volunteered for a buyout and founded...